Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

While I am definitely not a long term survivor, I am someone who has lost people close to me because of this virus. I watched friends and family hanging on for dear life in the mid 90's for something new to come through. I helped bury my ex-wife's sister two weeks before I was diagnosed (while waiting for my results) after she had a stroke. When I visited Elaine in the hospital I remembered she told me, "They say when you have a stroke the end is near".. I didn't have HIV and I was clueless about it. I told her whoever told her this was wrong. She came home the next day and her husband was taking care of her. Elaine asked for something to drink and when he left the room she slipped away. She was the second sister in law I lost due to HIV.

When I came into the forums back in 2005 I was a mess . In the mist of a divorce, fresh off burying Elaine, a new diagnosis, and no idea how I was going to get treatment. LTSer's along with newly diagnosed people guided me with their own experience and knowledge, and for that I was grateful.

I witnessed in these forums the very beginning of this whole LTS and everyone else division. I've accepted many times without a word, being lumped in with everyone else that the LTSer's feel are disrespecting them, whether it be their views or experiences. You guys generalize all of us newly diagnosed as not respecting those that have walked this path far before it was paved. While I understand your anger regarding a few in this thread, it's not fair to lump all of us as feeling the same.

Many of the people who have gone against the grain in this very thread, if you notice, have not been on meds for a year even if at all. Your (public enemy #1) has disrespected your forum on occasion, so why does his view even hold weight with you guys? It should be of no surprise.

Back in the day, well maybe a couple of years ago, we had something called HIV lite come into lingo for a day or two in the forums. The timing of the new medicines and those newly diagnosed around the same time made us out as pariahs to those living with this disease for some time, and while a few individuals may have blatantly disrespected the LTSer's at the time there were still those of us that never did so.

When I first came here I just wanted to know one thing from you guys, and that was if I would get to see my then 3 year old graduate high school. You guys said I would as long as some bus didn't hit me..... remember I was also the guy who called the CDC at 3:30 am because I had no one to talk to.... and also sadly the same guy who was Baker Acted because once again, I had no one to talk to...lol.

So with that I have lost my train of thought and have no clue where I was going with this... Some of the comments in this thread about Magic are the exact reason I always said he was a poor model regarding those of us living with this disease. I could be wrong, but if the guy would just come forward and share what it's like for him, I think a lot of the negative population would be surprised. Who knows though, I could very well be mistaken.

speak for yourself. I'm a LTS and it doesn't insult me. Like David said, it's an argument that can't be won so why dwell on it? If I let shit like this bother me I would have been dead a long time ago from all the stress.

Let it pass and get on with your life. If you want to dwell on something, think of the beautiful fall colors, the holidays, Thanksgiving, family, friends. The list goes on and on and on.

robert

She is speaking for herself and it's condescending to suggest otherwise. Maybe you should follow your own advice and not dwell on it. Let her comment pass and get on with your beautiful life. That's YOUR advice. Just what the doctor ordered.

Thomas, I'm not saying that all newer diagnosed people disrespect LTS'ers. But, for someone to suggest that how we look and feel is totally due to how we take care of ourselves, and to compare Aids to buying shoes is insane, at least to me. I did the same things as my friends I've lost, yet they died and I'm still here. Everyone's body is dfferent. Some people are LTNP'ers, and live on without having to have meds, and doing very well. Others have been on meds for years, and are having problems such as those described in the article. And some have died, no matter what they did to try to survive.

I'm not generalizing all newer diagnosed people. And LTS'ers should not all be generalized either.

Let it pass and get on with your life. If you want to dwell on something, think of the beautiful fall colors, the holidays, Thanksgiving, family, friends. The list goes on and on and on.

You don't even know me, so don't think I "dwell" on this forum all day. Far from it. Yesterday I took two of my grandkids to the movies and out to eat. I have quite a life outside of here, which obviously you didn't even think of when you posted, and made an "ass"umption about me.

Don't tell me how to think, Robert. You told me to speak for myself, so you do the same.

Logged

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

the evolution of this otherwise intriguing/eyeopening/thought provoking thread appears to have really gone south...

many of you lts folks here have:

• lived with hiv since its birth twenty-somewhat years ago.• experienced extreme devastation, isolation, loss and endured a unique set of hardships different from those diagnosed in today’s world, but nonetheless resultant of the same horrible disease that we all share.• experienced significant secondary side effects from earlier generation hiv meds that you took to stay alive.

i admire your bravery and fervor. my heart also goes out to all of you hiv pioneers...those of you who are still here today, and the ones that unfortunately, are not.

Many newbies here look up to all of you to share your experiences, knowledge and wisdom. in whatever way you lts folks feel is analogous, you are like teachers, leaders and mentors on these forums, putting you all in a unique position. i realize that most of you likely didn't have that kind of rock to lean against when you all were where we are currently at; which yes, is unfortunate but as timing had it, many of you headed this epic disease. while i can understand that some of the newbie forum comments spurn frustration for some of you, many of you do have twenty somewhat years experience in this, and that experiential learning affords most of you a significant edge over most of us.

at the end of the day and irrespective our our particular walk of life, color, sex, orientation or occupation, we're all here with one commonality: hiv. we come here for information, support and understanding. with all due respect to all forum members, my two cents is let's all make a better attempt to make that happen and agree to disagree on certain issues. we already have enough division & hairsplitting between poz vs. neg in the world; do we really need it here too? just a thought...

It's interesting to see how people focus on the different risks. Some are focused primarily on fat redistribution, others on inflammation and dementia, others on bone health. Has anyone focused on the heart attack risks? Or the diabetes?

As the OP I would, however, like to request that people focus on the article rather than on the forums structure or generalizing based on people's experience as being or not being a "long term survivor" (a term that people use to mean different things, viz several inconclusive threads in these forums).

Like David NC I'm interested in the inflammation issues. In part, that's because I know that my own physical exam showed really high (30 times the upper limit of normal) on one inflammation marker a couple of years before the AIDS diagnosis. My heart checked out fine, so it was just unexplored. But now I wonder what the long term effects of up to a decade of unchecked inflammation have done. And how effective was that daily aspirin that I started around 15 years ago?

Rereading the article and the thread one starts to wonder if HIV is perhaps misnamed. While it certainly does cause immunodeficiency is that just by rapidly aging the immune system, i.e. a subset of its effects? Maybe this should be human early aging virus.

I agree with Ann and have discussed same w/ my local HIV/AIDS Care Coordinators & prevention & education folks. I also think that we as a CommUNITY should talk about, be unified & identified by the whole HIVe rather than a NAPWA... After all; we all have one but not necessarily the other!

I want to agree with max123 as well and offer these 2cents:

" What the public really loathes in homosexuality

is not the thing itself but having to think about it" -E. M. Forster

This is equally, if not more, true in regards to the current status of HIV/AIDS in America. I am speaking as one who has been a participant in and experienced the full history of the disease. I also speak as a pre-Stonewall baby boomer (born 1955) that has experienced the whole gamut of anti-gay sentiments; from discrimination, verbal assaults, harassment and a gay-bashing to discrimination and familial indifference and abandonment. One of my mentors, Oprah Winfrey, espouses that "Forgiveness is giving up the hope that the past can be different". A concept that I've tried to embrace as a way of healing my anger and self. However, I find that I can not embrace "Forgive and Forget" and I refuse to yield to the outside forces that expect it of me. Likewise, I refuse to abandon my mission to keep reminding us of these past mistakes in order to keep them from being repeated in the future.

Eleanor Roosevelt is attributed to saying:

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face...The danger lies in refusing to face the fear, in not daring to come to grips with it...You must make yourself succeed every time. You must do the thing you think you cannot do."

and

Beautiful young people are accidents of nature, But beautiful old people are works of art. Learn from the mistakes of others. You can't live long enough to make them all yourself.

One of the bones that this old dog can't let go of is the way gays have been regarded, treated and raised in America. While I can acknowledge that folks may have done the best they could or knew how to do; I can no longer restrain myself from saying that while that may have been true, it just wasn't good enough.

I was reminded of this after reading part 3 of a series about the local appearance of Judy Shepard in the Greater Cincinnati GLBT News, where she talked about her sons coming out:

"Matt was 18 when he came out to me, over the phone... And my reply was, Oh what took you so long to tell me? And there was this pause on the other end and he said, Oh well, how did you know before I knew? and my reply to that was, Oh well, they tell me it is a mom thing. Thank God I questioned, because it gave me time, about 10 years, to educate myself about what his life could be like should he be Gay. At that period of time there was not much positive literature... I knew that should he be gay his potential for becoming a victim would grow expediently. I educated myself as much as I could... So, I was preparing myself for Matt to come out to me and was not surprised when he did but was surprised it took so long for him to come out to himself... Make A Difference, Be Involved! I'm glad for PFLAG, Parents and Friends of Lesbians and Gays, a gift from God to the community, a counseling group, a support group, a wonderful collection of people with warm, loving arms for parents who are trying to understand their children, for children who no longer have the loving arms of their parents..."

This in turn reminded me of the words written by a dear friend in an article in her church's newsletter for World AIDS Day 1994:

"...Both families have been touched by the same devastating disease - AIDS. The families and churches have handled it very differently. The prejudice which has torn Mike's family in two has been based on his sexual orientation and not his soul or heart. Mike is just as valuable to God as Susan was but the people to which God entrusted their lives have treated them very differently..."

Matthew Shepard was lucky enough to have been born in (1976) the post-Stonewall enlightened era, 21 years after I. His parents didn't buy into all the crap, but instead prepared and educated themselves with the aim of being unconditionally supportive and loving. What a difference an era makes!!!

"What are you doing the rest of your Life...?" I've always felt, especially since being diagnosed in '91, that the least I can or should do would be to share my experiences in such a way that having done so would make it easier, better, less scary for those who may follow me...

Hhmm... What a difference these last 18 years have made! I may have made my peace, arrangements, payments and directives for my departure but I have long passed the span of time in which it was thought to have occurred! WTF: Now it appears that I have options to consider other than HIV/AIDS and a longer term to plan for.

Assurbanipal, you brought up two things that interest me. One is, of course, the diabetes. Mine developed when I was in a coma. I guess the feeding they were giving me through a tube had an extremely high sugar content, and apparently, from what I've been told, that's when it was diagnosed. But, I wonder what led up to my pancreas not being able to handle that sugar? I know when I was on Kaletra, my sugar ran higher than it does now (I just got switched to Isentress/Truvada). I don't know if some of the meds I was on in the past had anything to do with it; but, quite frankly, I haven't researched it either.

The other thing you mentioned is the brain inflammation, and you mentioned having a higher than normal level of inflammation. Were you talking about the brain? And how did they measure it? I'm very curious about that. Thanks.

Logged

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

You know, I hate HIV. I FUCKING HATE IT ..... I HATE MY EX FOR LYING AND GIVING ME THIS SHIT ...

Sorry, I read this thread last night and have had night mares all evening. I have two primary fears in life 1.) that i won't be able to take care of myself and 2.) that i would lose my mind. HIV looks like it will fulfill both my fears. I woke up crying and have been all morning. This article is the most terrifying thing I've seen in the last two years.

I know that other things can also contribute to memory loss. Stress has been shown to affect our memories and let's face it, having HIV is stressful. Not saying that aging, drugs and the disease aren't all contributing. I am saying that it might not just be one single thing but a combination of things. I didn't get out of the article that they had isolated exactly what was causing memory loss.

I am positive since 2007. I have always keep a good attitude. After reading this article, I felt like someone knocked all the wind out of me. I read all the comments and feel like I have just lost any reason for living. I have just been crying all morning and cant stop

You know, there are also a lot of LTS who have very successful careers and are still productive, etc. I know some personally and as far as well-known ones that come to mind: Bill T. Jones, Magic Johnson, Regan Hofmann, Edmund White and many others. These people are still using their minds and bodies quite impressively.

Just saying, there are many faces to HIV/AIDS in general and to long-term survivors of HIV/AIDS, most of them not dire.

Dear City BoyIf you are healthy and have had no HIV related illnesses, you are worrying about 'WHAT MIGHT HAPPEN". This is where all of us get caught up in a trap (mind games) in which we worry about things that have not happened. As a LTSer I can tell you that enjoying living is a goal to reach for regardless of your HIV situation. Count your blessings today...do you have a job? or are you in school ? Do you have a boyfriend and are you two enjoying being together? Hows the pet dog or cat? What wonderful movie did you see this week? Just to name a few.

So...get busy with living. Take care of your health and see you in a few years.

Dear City BoyIf you are healthy and have had no HIV related illnesses, you are worrying about 'WHAT MIGHT HAPPEN". This is where all of us get caught up in a trap (mind games) in which we worry about things that have not happened. As a LTSer I can tell you that enjoying living is a goal to reach for regardless of your HIV situation. Count your blessings today...do you have a job? or are you in school ? Do you have a boyfriend and are you two enjoying being together? Hows the pet dog or cat? What wonderful movie did you see this week? Just to name a few.

So...get busy with living. Take care of your health and see you in a few years.

Joel

The article scared me so much. That's why I keep crying. My health was always great, this just always scares me that my mind will slow up and I will be retarded or I will break bones. I just want to live and do the things that make life worth living. I work. I do not have a bf. I do not have a pet. I saw a Christmas Carol with my buddy who is a great guy. I like him very much.

He said I was in my early forties, with a lot of life before me And one moment came that stopped me on a dime I spent most of the next days, looking at the x-rays Talking bout' the options and talking bout' sweet times. I asked him when it sank in, that this might really be the real end How's it hit 'cha when you get that kind of news?Man what did ya do?He said

I went skydivingI went rocky mountain climbingI went two point seven seconds on a bull named Fu Man ChuAnd I loved deeper And I spoke sweeter And I gave forgiveness I'd been denyin'And he said some day I hope you get the chanceTo live like you were dyin' ]

Well, it's Sunday morning (11/15) and here I am pondering why... After I've survived and lived thru all the other stuff I have, it comes down to me & these damn critters

Pisces: You need to figure out what's important to you and what's not. It's time to take stock of what's going on in your life. The good news is that your significant other, trusted friend or mentor is more than willing to talk about it, and they'll have just the perspective you need. All you have to do is call that all-important meeting. Don't be afraid to put your heart and soul on the line.

Think of today as a time of restoration for yourself, dear Pisces, in which you can come to a point of great ease and comfort. Trust yourself and the people around you. Open your eyes to the reality of the situation at hand. If you are currently working through some major changes in your life, make sure you have faith that whatever happens will work out to your benefit.

Just when you thought you had everything planned out and working smoothly, dear Pisces, (love) LIFE! comes in and clogs up the works. Suddenly your attention is diverted and your concentration flies out the window as that dazzling being A BedBUG! catches your eye. This could be a good thing or a bad thing, depending on how you view the situation. Remember that both aspects of your life are important, and the key now is to find a healthy balance between the two.

Hhmm... "WTF: Now! I'm gonna Live...!?" For this ... I need a 'cookie'...

OK! So now its Monday, at least its not rainy! LOL...

"Freedom means the opportunity to be what we never thought we would be." -Daniel J. Boorstin and "We wander but in the end there is always a certain peace in being what one is, in being that completely. The condemned man has that joy." Ugo Betti

Kids!, I just passed my 18th milestone on My Journey and at this mile marker I have to pause to fight the "Battle of the BedBugs"! I was in my late 30's when I stopped on that dime, but for me, as y'all, it was HIV At that point in time, I had come to be a long time employee of Cincy's hottest gay dance/video bar, even had my test done in the parking lot when the mobile testing van made one of it's regular stops... There's a big, big difference between "what we know, what we think & what we can prove..." then and now!!!

Based on what I knew then and the resources I had available, I made sure that whatever was gonna happen, I had to have a home, health care and support. After that it was makin' sure that my final arrangements were taken care of; so I wrote a Requiem and took out burial insurance which is now paid off and has increased in value!

At 54, I'm Living with AIDS -600+ TCells, Undetectable Viral Load; lymphadnopathy, hypertension, lipidemia, depression, 12 scripts, Living Trust, Will, Living Will, a planned Memorial service and paid-up Burial insurance. My ID Doc says I'm not gonna die from it anytime soon, am fairly certain I couldn't get a job in this market if I had to and it works for me -Livin Like I was Dyin' in Freedom with a certain peace and Joy in being what one is ! Michaelwww.mwcltonline.spaces.live.com, W

The article scared me so much. That's why I keep crying. My health was always great, this just always scares me that my mind will slow up and I will be retarded or I will break bones. I just want to live and do the things that make life worth living. I work. I do not have a bf. I do not have a pet. I saw a Christmas Carol with my buddy who is a great guy. I like him very much.

Well sd blue!... You know, there are also a lot of LTS who have very successful careers and are still productive, etc. I know some personally and as far as well-known ones that come to mind: Bill T. Jones, Magic Johnson, Regan Hofmann, Edmund White and many others. These people are still using their minds and bodies quite impressively.

Just saying, there are many faces to HIV/AIDS in general and to long-term survivors of HIV/AIDS, most of them not dire.

Logged

"HIV is something you live with every day for the rest of your life. You may never die of It, but you will always die with it..."

What difficulties have you encountered physically from being HIV positive? Has it been a difficult row to hoe?

EW: No. I found out I was positive in 1985, and I was probably positive already for five or six years at that point because I was very active sexually in the late seventies, early eighties. I would go to the St. Mark’s baths, which was very close to where I lived, and get fucked 20 times in an evening, so why would I have not been positive then? The first test became available in 1984, but I moved to Paris in late 1982 and I wasn’t really living near any place. So when I had the test done in 1985 in Zurich, the results had to be sent to America to be analyzed; we had to wait three months to get the results. That’s when I found out I was positive. I only started taking meds a few years ago. DS: Why did you start?

EW: My doctor advised me to because my counts had dropped below 500, or something. They had always been around 700 for years and years. Suddenly it seemed like they were drifting faster and faster down. I thought if I took meds I would have more energy, and I did. I used to take two naps a day.

I'm a little bit surprised that he is so casual about it. I understand HIV was not the theme of the interview and he wouldn't want to get too detailed, but saying "My doctor advised me to because my counts had dropped below 500, or something" makes it sound as if he barely pays attention to his own situation. Then again, if he was not progressing for so many years, perhaps it was natural to lose interest in the question.

Those who know Ed White have frequently debated whether this is just the way he wishes to come across in interviews or whether it's a coping mechanism. In point of fact, there are those who believe he expatriated himself to Paris in 1982 because, among other reasons, he foresaw the horror that would befall the gay population of NYC at that time. When he received his HIV-positive diagnosis in 1985, he has admitted, in other interviews, that he suffered a nervous breakdown and stayed in bed for almost a year. This was at a time, of course, when the diagnosis was literally a death sentence.

Logged

"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

I've had a similar experience to jg.....I really do like my ID doc now, but he has tended to judge my health strictly "by the numbers". BTW, I can put my numbers up against anyone's here, and come out looking fantastic. T's in the 800s and VL undetectable.

However, I take a LOT of meds. Three heart meds, due to congestive heart failure caused by bacterial endocarditis when I didn't have an immune system....I take a pretty good dose of anti-depression meds too, as well as BP, Cholesterol, etc. Works out to about 24-25 pills a day.

My left diaphragm is paralyzed, which makes me wheeze a bit sometimes, and difficult to "catch my breath". So yes, my numbers look fantastic. But there's more to my total health picture than just the numbers.

The article is very disturbing to me.

Alan

Logged

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Alan, this is exactly how our ex-PID treated Mim. We were led to believe that, once her numbers improved and she became undetectable, she would suddenly be "fine". So, when other things went south (her memory, vision, learning, muscles, etc.), we were sent to endless other specialist being told that it had NOTHING to do with her HIV because, after all, she's "better now". We (she) was done a horrible disservice by not being given information about the other issues that arise simply by being Poz - regardless of what the numbers look like.

I tested positive in 2005 but I probably contracted HIV in 2002. I have not seen any changes in me and I am 41 y/o. In fact most people think I am in my early 30´s, I am taking piano lessons and learning faster than most other pupils of my teacher...I don´t feel different in anything but I realize my experience for now does not mean the article in "wrong". Maybe I am being lucky.

I tested positive in 2005 but I probably contracted HIV in 2002. I have not seen any changes in me and I am 41 y/o. In fact most people think I am in my early 30´s . . .. Maybe I am being lucky.

Yes, Juan, you are lucky.

I have nearly a quarter century of living with HIV under my belt, and the misshapen body that goes along with having taken the early regimens that were dynamite in fighting the virus, but came with a price.

I now face the ravages of age, and the rapid aging brought on by living so long with the inflammatory effects of the virus combined with the toxicities of the meds, despite my best efforts at forestalling them with diet, exercise and clean living.